Just had call from care home 1.45am

[LaBelleSauvage123]

DF has had yet another fall and they’re waiting for an ambulance to take him to hospital as he has swelling on his back. He was in A&E all day on Thursday waiting for a scan for hip pain caused by a fall last week. He has undiagnosed dementia and the recent falls and hospital visits have increased his agitation again to the point where he’s very frightened and confused at night and won’t stay in bed. If they put the bed rails up he just tries to climb over them and gets even more distressed. The poor night nurse sounded at his wits end. I could hear dad talking and he sounded really frightened, talking about people hating him. I can’t go in as I have a disabled son who I need to take to his day service in the morning and I know we’ll be in hospital for hours and hours. My sister is on holiday and my brother lives miles away. It’s so, so difficult. Surely there are medications they can give at night that help to calm people? We’ve just been told he can’t be referred for dementia assessment until 12 weeks after his last lot of antibiotics for a UTI, but he’s only just finished a course and gets them all the time! ( He’s worse when he has them but still confused when he doesn’t).

Sleep medication can have negative effects in dementia patients. It can cause further cognitive decline and increase the number of falls so it doesn't tend to get prescribed. It is brutal, a number of my family members developed dementia and it's awful watching the person you knew and loved fade away.

Oh no, I'm so sorry. I would have thought there was a way to make him more comfortable but I don't know how medication works in care home. At least the pain can be treated. If you can't go then try doing something calming for yourself, make tea and toast and try to sleep. Listen to headspace or watch TV. You'll be able to at least think straight once you feel calmer. I hope your Dad feels better soon, which he will I'm sure.

Hello LaBelle
I feel terribly sorry for you and my dad also had dementia. Its very very cruel. Can you make a cup of tea and a biscuit ? Somthing to comfort you. I can see how distressed and worried you are but for now you need to be at home with your son. I always wished there was a magic answer and of course there isn't. Its very hard to accept

Yes they can give sedatives, and hopefully they will prescribe them for your dad now.

My mum has MS, COPD and vascular dementia. She is still at home but has limited mobility so we don't have to worry about her getting up and moving about but she does become more agitated and violent at night and the sedatives do help calm her down.

You're totally limited in what you can do, your dad is in a care home and they are set up for dealing with situations like your dad is having. They've called you as protocol as he is having so go to hospital. He'll be in overnight so visiting tomorrow is ok. Try and get some sleep tonight

If he gets a lot of uti he would benefit from daily low dose antibiotics. I used to get them, but since taking Nitrofurantoin daily I haven't had a uti for a year. At least you could get a dementia assessment if that was sorted.

We've known for 10 years that my mum was suffering from dementia. She was only diagnosed with vascular dementia around 4 years ago. The amount of times we were told ' oh she might have a UTI, we need to rule that out first' was infuriating to say the least. It's like a default with the NHS, my mum never once tested positive for a UTI yet every time she had an 'episode' the same line was trotted out. Nearly send us all mad, grrrrr

At the end of the day, a formal dementia diagnosis makes no difference to the care your Dad needs. My Mum has dementia and is in a care home. She had a appointment for assessment at the local memory clinic but became too distressed to complete the process. Lack of formal diagnosis as to which type of dementia she has not made a jot of difference to her care. She is a lady who is confused, has memory loss, becomes agitated, refuses food and drink and wandered off when she was still at home. Night time sedation didn't help - and it was a nightmare to get her to take it anyway

Your dad is in the right place - I always think it's a shame care homes have to inform relatives as soon as the slightest problems arises - when there is nothing family members can do. It would be better to leave informing you until the morning - but they have to tell you.

Make yourself a drink and lie down to get some rest

Thank you all. The home just rang again to tell me he’s gone to hospital.

I don’t know what the laws are in the UK however sedating people to make them stay in bed is considered a form of chemical restraint. It’s not recommended and can actually make things much worse as he’ll be even more likely to fall if he makes it out of bed all groggy.

Your poor dad sounds very frightened. I would be pushing for a medication review from his GP in case over medication is contributing to the problem. Have they tried soft music to help soothe him? Is there a night light so he’s not waking in the pitch black feeling terrified? Is he in pain that’s not being well managed? Does he need to go to the toilet in the night and if so, how is that being managed? A sleep chart would also be very useful so they can track when he is waking and what happens when he does to try to understand why.

I have an elderly relative living with me. Hearing that it is not advisable to sedate people at night is news to me. I had hoped that if he became difficult at night , that would be a solution. We have had this discussion as I am sole carer and we both know that I can not do nights and be able to function during the day.
You have a lot of responsibilities it seems. I hope you get support from your siblings , it is unfortunate that your sister is away right now.
Glad to hear that he is in hospital. Do you think they will discharge him with a care plan to address the night time issues?

Is your dad in a care home or a nursing home? Care homes may not have sufficient staff or training to manage someone who is agitated, wandering and distressed and a move to a more specialised unit may help.

This was discussed for my relative, although it turned out to be a brief episode of delirium that settled within a week.

I used to dread getting a phone call at night from mums care home and ended up turning the volume off over night - I did let the care home know! Mum went into care at the start of the first lockdown so we were not allowed to visit normally for much of the time she lived there - she died in May this year. A night time phone call was pointless really but procedures meant they had to let us know when an ambulance was called. So I understand totally how you feel when waiting for news.

The point came when we decided that mum would have no more treatment in hospital, she got in a vicious cycle of getting a UTI, refusing to eat or drink so needed hospital a stay to get IV fluids and antibiotics. Then being dismissed in a worse state than she went in due to lack of care because the nurses did not have time to persuade her to cooperate or to calm her enough to get her to the toilet or into a chair. So I had to speak to paramedics to refuse treatment on her behalf ( with the approval of her doctor of course) to allow her to die in her own room when the time came.

The care home were very reluctant to sedate residents as they did not want them becoming “out of it” so were prepared to try all sorts of measures first. My mum was very aggressive during personal care, it took four carers to get her washed and dressed each day as she kicked, screamed and bit them! In between times mum was more calm and enjoyed chatting to the carers and discussing her favourite topic - football!

She was a wanderer at night so had a mat by her bed to alert carers if she got up at night. As her mobility worsened, they lowered her bed and put a mattress by the side so if she did fall when getting up, she did not have far to fall and had a soft landing. They also monitored her every two hours through the night and if they found her awake, they would offer her a cup of tea and a snack then sit with her until she settled.

Dementia is a very cruel illness which needs a lot more funding for research into a cure or effective ways to treat it.

Thanks for all your replies. DF has a sensor mat by his bed but the staff just don’t seem to respond immediately. He’s in a nursing home but not in the dementia unit as he hasn’t been diagnosed yet. We have an agreement in place that he shouldn’t be treated in hospital for things that can be managed in the home - but obviously potentially broken bones don’t come under this. The staff are very kind but there’s no real specialised dementia approach where he is. We were in the process of looking at a specialist dementia home as his mobility had really improved but now I think they’ll say he needs nursing again.

The issue of sedation is something I discussed with the night nurse, and he said similar to those upthread - they try to avoid it as it could make things worse. I will try to speak to his GP today but as we all know, that’s not easy atm!

Sedation is definitely not a good idea....often has the opposite effect in the elderly to the one you would want anyway
Bedrails are also not a good idea - far better to have a profiling bed that will go almost to the floor and crash mats along with very regular checks

Here's what I think - take it with a pinch of salt.

You need to meet with the GP and care manager (by zoom?) and agree a care plan. Talk in detail about medication and options. It might be that an antidepressant, or increased dose of one would reduce your DF's fears and help with the situation. Agree that bed rails can make things worse.

If you don't want to be called at night and you trust them to make the decisions, tell them not to call you until 8am. What are they achieving by doing so? Have you ever objected to what they want to do? You could set boundaries on what decisions they can make without calling and what you want to be involved with.

Yes, this is true. Giving medications purely to incapacitate a person is chemical restraint.

A Dr could prescribe something to help a patient sleep and encourage natural sleep, however any medications that cause a patient to be drowsy may not be prescribed to someone already having regular falls.
If the panic and agitation is a regular occurrence (not a result of the fall!) Then he may benefit from a medication for anxiety or to reduce agitation, whether as a regular medication or as a PRN (as needed)
This is something you can discuss with the care team and the GP.

If he's having recurrent UTIs aswell this needs to be resolved before medication intervention IMO, as the falls, agitation, etc can be commonly caused by UTI.
Check with the home as to whether he is on a fluid intake chart to monitor how much he drinks, and if not request one.
Ask them what fluid options they offer, such as water ball sweets, watermelon, pears, different drinks. And if there is anything he really likes to drink, liaise with the home to ensure he has this in regular supply.
Care staff can also remind him to take hourly fluids (fluid charts can help with this).
Is his room near the nurses station where he can be easily kept an eye on? If not, is a move to a new room possible?
Does he have a falls mat in place?
Would the home consider an ultralow profiling bed and a crash mat? This is something that we used to do as a last resort when we had exhausted all other options of keeping that person safe because although they'd still fall, it would make the fall safer.
On the same vein, you may wish to consider hip protectors, which are funny shorts that go under the clothes that contain 2 hip pads and a pad over the coccyx to reduce the risk of a fracture.

As a pp said, you can request that the home don't call you in the middle of the night unless it's an emergency, however this is still at the homes discretion and if they've had to phone an ambulance for a fall they may still consider this urgent enough to call.

Hope at least some of this helps OP, thinking of you.

My stepfather is in a dementia home. I am their point of contact. I have told them not to phone me between 8pm and 7am. They were phoning me every time he had a fall - sometimes twice a night!

There are a couple of things that concern me about your DF. Firstly, bed rails should not be being used unless the person is on a ward in full sight of the staff at all times. It is likely that should they attempt to climb over them, the possible resulting injury will be much worse than just falling out of the bed onto the floor. Your DF should have an alarm mat, which won’t stop him from falling but will alert staff when he does. Most of the falls such people as my SF have are more like sliding to the floor rather than a crash to the floor, because for most it’s due to muscle wasting or low blood pressure rather than tripping up whilst walking.

Secondly, they should have a policy (and risk assessment) in place for what happens when he does fall. Have the falls team have been out to assess him? The risk assessment should state what the protocol is for when he does fall. My SF’s protocol states that an ambulance will be called if he receives a bang to his head that results in blood loss (he is on blood thinners), or if there’s an obvious sign of a broken bone, but otherwise he will be placed back in bed and monitored every 15 minutes for a period of time. My SF is deteriorating rapidly, isn’t expected to live much longer and I’m certain would hate to die in hospital. It’s a crap way for his life to end - I wouldn’t wish it on my worst enemy.

Hi OP
I hope you've managed to speak to the care home manager about how the issues could be alleviated. You should be able to see his care plan. In the meantime I guess he may still be in hospital?

When my mother first went into a (dementia) care home she was quite agitated and couldn't sleep, and fell and broke a bone within two weeks of arriving. Four years later she has had several falls, some resulting in other broken bones. They use pressure alert mats but even if there is a carer is 10 feet away they cannot necessarily prevent a fall.

The manager told me what others have been saying - they do not give sedation because it can cause residents to be more wobbly on their feet and lead to more falls.

The care home is obliged to tell you about these incidents asap. However I requested no calls between 9pm and 7am, because there is nothing I can do at 2am about whatever has happened. You could consider limiting the times when you're contacted.

Sorry I haven’t updated - things have moved on a bit. Dad came back from hospital last week with a diagnosis of a chipped hip bone and two cracked ribs. In the days since his mobility, mood and cognition have all declined. His GP visited him yesterday and then rang me. He’d had a look at the scan and thinks his hip is fractured! So dad is now being hoisted whereas when he left hospital the physio told the home he should be walking short distances. The GP told me that he doesn’t think that Dads agitation is characteristic of dementia as it’s come on too quickly. He thinks he does have underlying dementia but is concerned that the agitation may be caused by a small brain bleed that was missed when he had a full body CT scan in hospital ( or hadn’t started). If he does have a bleed then they won’t treat him as he’s too frail for surgery. All his other obs were normal - no signs of infection. So he has prescribed ‘just in case’ meds and they are basically expecting him to decline and die in the home.
My concerns are - what if the agitation is psychological and not down to a brain bleed? Dad was so unhappy when I visited today - saying they are torturing him to punish him for the indiscretions of his second wife ( he has never had a second wife) and that he knew I didn’t believe him. I can’t bear the thought of him dying in this state.

Oh goodness what a mess. I would only say - try to trust the GP. Also that the anticipatory medication should make sure he is calmer - maybe ask if they've used any of it, or what plans they have to calm him down?

I have asked that and they have said although it’s end of life medication they can use it if they feel he’s very agitated.

I'm so sorry. Will you be able to visit him?

Oh yes every day. The home is very local, luckily. I’m still not sure about the brain bleed though. I think it might be completely psychological. He was a very anxious man before the dementia and I can imagine that the delusions he’s having are just heightening that anxiety to an unbearable extent.

My Mum has Vascular Dementia. She gets up all night as well (or at least she did, she is currently in hospital). Her GP prescribed Circadin which is basically melatonin. It’s really helped.